One Year Old!!!! Happy Birthday Aila!

I can't believe Aila is One!!!

Our girl is a bundle of excitement!

She loves to dance and pump her legs and splashes like crazy whenever she is in water.

She has become quite the daddy's girl lately, which is super sweet to see. During the photo shoot she only wanted to be held by daddy and would not be put down.

She can stand on her own and is daring to take a step here and there

She has four teeth, two top and two bottom

We call her "Our Little Lady" because she always has one or both feet up in the air.

She signs, "all done" "more" and puts her little hands in the "I don't know" position

Her favorite song is the soundtrack to the credits of Avatar the Last Airbender

She is super smiley and loves to climb

Annoyed

After over a month of calling the doctors office and waiting for authorization to see Dr. R (the doctor who will be performing the schlerotheropy for Aila) we finally met with him today for a consultation. He told us a lot of things that Dr. P had already told us but added some new things, like the treatments will be 3 months apart instead of a week apart because of Aila's age. Which means that this could be a year long process instead of two months. We asked him when treatments would start and he said "as soon as we are able to get the authorization" I'M SORRY WHAT?! Turns out that the million of calls that I have been making only authorized us to see Dr. R for a consultation, in which basically he said "yup, she needs the treatment" and now we need to get authorized for the treatment!

Could you please pray that this time the authorization goes through quickly. We may still be a month or two out before we can even start this thing. In the mean time we are monitoring Aila's breathing and praying that her cyst doesn't get any bigger.

Dr. Visits

Today both Stuart and Aila had doctor appointments.

Stuart had a check up on his leg with his radio-oncologist. Basically the Dr. looked at his leg (things look normal) and told Stuart to get another MRI to make sure things are going the way we want them. Stuart is already getting a CT scan in early February so the MRI is scheduled for the same day. These appointments are a constant reminder that though things may feel normal, they are not.

Aila had a check up with her ENT. Aila has been sick for about a week and has started to snore when she sleeps. This could of course be totally normal, but it could also mean that her cyst was growing into her air passage, so to the doctors we went. Poor Aila is so afraid of doctors now. She used to be completely fine but now when she sees Dr. P, who happens to be an amazing doctor, she starts to freak out, and this appointment gave her even more reason. To make sure that there wasn't any blockage, the doctor had to put a camera up Aila's nose and down her throat. Aila was terrified. As soon as the doctor picked up the tube (it was super skinny) she turned and faced me and was clawing to get away from the doctor. It was difficult to pry her off of me and turn her around, tuck her legs in between mine and hold her hands down while a nurse held her head. Everything is fine, and honestly about 5 minutes after the procedure she was calm and a bit smiley. The doctor asked if he could take a picture of Aila's neck for his students. I said that was totally fine so he left to get a camera. When he came back, Aila took one look at it and started freaking out! He couldn't take the picture because she was thrashing and so scared. It made my heart so sad to see the fear that has entered hers, especially when I know she still has so many hard visits ahead of her.

It's so hard to see your baby go through things that would even scare you. I would be scared to be in her shoes and yet here she is, only 11 months, going through more medically then I have ever had to go through. Today has been a bit draining.